Saturday, October 31, 2009

Happy Halloween!

Trick Or Treating was Thursday evening in our town. Dave and I had over 250 kids!!! I ran out of candy (11 bags worth) after an hour and 10 minutes....whoa! Our little Tiger slept through most of it, but here are a few pictures of the little man. He now weighs 9 pounds 12 ounces. He has an appointment with his surgeon next week to check-in on his progress.

Monday, October 26, 2009

Homecoming Photos

James liked the carseat only when the car was in motion!

A cool sign and baloons from a couple of cool neighbors...thanks Tara & Karen!!!
James enjoying front porch sitting with Daddy.
Oliver wishing he could enjoy the front porch, but he settles for watching through the window.

James' first nap on the couch with his Daddy.

James with the prayer shawl a church in Festus, MO sent us. God's people are amazing!!

James wearing his outfit from Koselke! :) What a cute little dinosaur!!

Saturday, October 24, 2009

Home at Last

Dave, James and I made it threw our first two nights at home. He is such a noisy baby; even when he is sleeping he makes noises (grunts and moans mostly). Right now James is sleeping in a bassinet in our room, but if we can't get used to his noisiness he is going to get demoted to his crib in his room real fast. He sleeps pretty good until it's time for his 4 am feeding (we're sticking to the 4, 8, 12 schedule from the hospital as much as he will allow it). Then he doesn't want to go back to sleep without being held endlessly (or so it seems). He pretty much sleeps right through his midnight feeding... a perk of not having to actually swallow your food I suppose.

Anyway, we are loving having him here at home despite the lack of sleep! We can't wait until he's big and strong enough to visit cousins in Indiana and Missouri! In the mean time, all the healthy are welcome in Pittsburgh!

Wednesday, October 21, 2009

Carseat Photos

Snoozing away in his carseat.

Road Trip!

James gets to come home tomorrow! We are so excited!! He got all of his 2 month shots yesterday and will have his first pediatrician visit on Friday. He is sitting in his carseat right now taking his carseat test (a test all preemies have to take to make sure they don't have any breathing problems while in the carseat). I have some cute pictures of his first carseat sit (he passed out right away), but it's not letting me upload pictures right now for whatever reason. I will post them as soon it lets me.

Wednesday, October 14, 2009

Almost Forgot

We would never have made it through the 7 hour ordeal without the fabulous care package from our small group friends in West Lafayette! You all are the most fantastic people and we could not ask for better people to call our friends. The snacks, magazines, and games were amazing, even if I did want to hit Dave with the travel Guitar Hero after an hour (seriouly, no volume control?!). Thank you so, so much... we miss you all!!

James loves his hat, Miriam. He's totally wearing it on his first trip outside of these walls!

So much for the easy fix

James has finally made it back from the's only been 7 hours! The short story is his esophagus is still not connected, but he gets to come home hopefully next week. Corrective surgery should be able to take place in December or January.

The Long Version (not for the weak stomach people)... It turns out that even though there were no holes between his trachea and esophagus, his esophagus and trachea were stuck together inside his neck. (This explains why his upper esophagus has not been responding to all of the stretching procedures the doctors have done in the past.) The doctors had to go in through his neck to split the trachea and esophagus apart. Once this was done, his upper esophagus would still not stretch enough to connect it to the lower esophagus. Thus Plan E (or whatever we're up to)... James' upper esophagus is now coming out of a hole in the side of his neck. It is much like a tracheotomy, but with the esophagus instead. This means that he no longer needs the suction in his mouth because his saliva (and anything he takes orally) will just drain out the hole in his neck. He will still get food through his G tube. In a few months the doctors will once again attempt to connect his esophagus. At that time, they will probably have to use tissue from his stomach to close the gap.

For now, James is still on the ventilator. They want to let him wake up naturally and will take it out in the morning unless he is wide awake before then. He will get to start his feeds again tomorrow. He should be able to come home once he returns to full feeds and is gaining weight. When he comes home, we will give him feedings through his G tube and take care of the esophagostomy site. Other than that, he won't have any restrictions to his daily activity. He will have appointments here every other week or so to monitor his progress.

Stay tuned for updates...

Friday, October 9, 2009

Round 5

James' next trip to the OR is scheduled for Wednesday, October 14th. The doctors have been pleased with the growth of his esophagus this week, seen through the daily x-rays. The plan is to go in Wednesday morning to fix him up (I'll believe it when I see it). However, if the x-ray they take that morning doesn't look as good as they want it to, then they will postpone the procedure.

James is doing alright. He's back on full feeds and is gaining weight. The nurses alternate morphine and tylenol for the little guy every 3 hours to keep the pain away (I'm guessing it's not pleasant to have giant clamps attached to wires coming out of your back). So he's not in pain, but he is also not quite comfortable. Each day I just pray that he sleeps through it all!

Tuesday, October 6, 2009

4th Time's Not a Charm

I am at a loss for words. Unfortunately, the doctors were not able to connect James' esophagus yesterday. I will try to explain... The half-centimeter distance turned out to be more like 2 centimeters once they got inside. This is the first time the doctors have actually gone inside with a scope and the previous xrays were a little misleading since they can only take two-dimensional pictures. Turns out that his upper and lower esophagus are not directly lined up which makes the distance farther. The doctors said that it would have put too much strain on his esophagus to fix it yesterday, which means too great of a risk that it would split before it could heal. So the doctors attached metal clips to each end of his esophagus and a string-like wire. These wires were then put through two incisions through his back and a clamp was placed on the end of them to hold them in place. Each day for the next week the doctors are going to pull on the wires and tighten the clamps to help lengthen his esophagus. The clips on each end of his esophagus will allow them to take xrays to see the progress made each day. (The doctors lined up his esophagus in surgery so that the xrays would be more accurate). They are hoping that this process will stretch the esophagus enough that it will be able to be fixed next week.

James is hanging in there. He can't be on his back or right side because of the clamps holding the wires in place. He also can't be on his stomach for now because of the IV and IV brace in his arm. He gets pain killers every 3 hours, but he still isn't allowed to eat and we can't hold him yet. He is off the ventilator.

Dave and I are hanging in there with James. We're looking at another 3 weeks here at least. It feels like every time we start to see a light at the end of the tunnel someone turns it off or moves it farther away. We are trying to focus on the positive things. Some days are harder than others, but we will make it.

Thank you for all of the continued prayers. I will let you know more when we do.